Saturday, August 22, 2009
From "Babylon Five": The future should come with a label,
"Some Assembly Required".
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I went to a movie in Albany last night. A very wet and windy thunderstorm had come through late in the afternoon, ending just before I headed upriver. Southern Columbia county had apparently been hit hard by the wind. There were trees down all over the place. County route 10 was technically closed. I turned onto route 10 before they got the signs up on the southern end, so I got to see the damage - five large trees down in five different spots, chainsaw crews working. I had to edge past branches and treetops in the road. On route 9G there were flagmen at one spot to direct traffic off the road around a huge downed tree.
In a deserted wooded stretch I went through a puddle in a dip in the road, and lost the power steering! That was scary, because it was a winding country road lined by ditches and trees, and I was moving at 55 mph. The steering came back quickly, but the battery indicator in the dashboard blinked for a while.
The movie was "District 9". It was pretty good for what it was, but I think they concentrated on the wrong story. I would have been more interested in how the story began - where did the aliens come from, how were they rescued, what led to their being confined in a compound, how did people learn to communicate?
If you saw it, please answer:
In those first 15 minutes, did you think of "The Office"?
Did MNU's tactics remind you of Blackwater?
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Herrad, at "
Access Denied...", is finally getting fitted for a wheelchair, after having been confined to bed for one full year. "Fitted" is the keyword there. She lives in Amsterdam, and I can't help but contrast the support she's getting with what happened with Jay. They are measuring and adapting, forming and fitting, and she'll end up with (we hope) a chair that will be comfortable and supportive.
After Jay's third craniotomy, he had left side neglect, which is kind of like paralysis, but more. The left side of his body, of the entire world for that matter, simply didn't exist for him. Jay was 6'3" tall, and about 220 lbs, and he had no awareness of half his body. Proportionally, his legs did not account for his height - he had a very long torso. His shoulders were almost two feet wide. Sitting was difficult, because he didn't compensate for the weight of his left side, or the width of his shoulders. His bottom would slide forward in a seat, and he'd slump heavily to the left.
The reclining wheelchairs worked well for him in the hospital, because they supported the weight of his upper body, and prevented the forward slide. But reclining chairs were not available for home rental, at least not through the only medical equipment supplier available to us, a place in Kingston.
Whoever wrote the prescription for his chair must have noted that he was "a very large man", because the first chair delivered had a super wide seat. That was even worse for his slump. It was replaced by a regular chair, with flat seat and a low back, and that was it. Note that he couldn't shift his weight, change his bottom position, so this almost guaranteed pressure sores if he were to be in it long. The flat seat guaranteed a gradual forward slide, and he was too big and heavy for me to pull or push him back.
I called the suppliers, the insurance company, his doctors, everyone, and they all told me that was it, all we were getting. And, by the way, we had the best insurance coverage available. I suspect his diagnosis and prognosis factored in - there would be no custom chair for someone not expected to be able to use it for more than x weeks or months.
So I bought a gel seat cushion, well over $200 out of pocket. It worked, but it was thick, and raised him in the seat, which made the back even lower, and now he slumped backward as well as to the left. Tying him in with a sheet didn't work because with the low back, there was nothing to tie it to.
I finally took some super strong cardboard, and built a higher back with a "wing" on the left side. With pillows tucked in, this kept him upright and centered. The first time I took him to the hospital for a scan with this arrangement, the nurses had a fit. When he came back from the scan, the cardboard was gone. I had him in the wheelchair on the passenger side next to me in the front of the wheelchair van, and by the time we got home, he was leaning so badly his body was resting heavily on my right arm, making it very difficult to drive.
After that, whenever he had to go in for tests, I had to call a medical van service (not covered by insurance, by the way), and they took him in on a stretcher.
And this was in what "they" tell me is the country with the "best" medical care, and with the "best" insurance.
Sheesh.
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Two days last week I rebelled and substituted "bad" food for most of the Nutrisystem meals --- and lost two more pounds. I think I figured it out. Nutrisystem meals are loaded with salt, a lot more than I normally get. I think going off the salt resulted in a loss of water weight.
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